How Cancer Pain Undermines Health and Treatment

To be struck with cancer, or to have a loved one afflicted with cancer, is one of the most frightening events imaginable. To endure the dehumanizing pain of cancer without relief is overwhelming. To helplessly witness that anguish in a loved one is heartbreaking. To discover later, however, that the suffering might have been prevented is perhaps the worst of all.

Uppermost in the minds of many cancer victims are fears and anxiety about pain. We are now finally entering an era in which these fears may finally be put to rest. Today we are equipped with a modern arsenal of drugs and techniques capable of eradicating cancer pain in most cases. Around the country, in doctors' offices and pain clinics, many patients are successfully being properly treated and relieved of most of the suffering from cancer and cancer treatment. Yet, tragically, many cancer patients are not appropriately treated for pain and side effects; too many people are unaware that modern approaches to treating pain are almost always successful.

Cancer Pain Is Needless, Yet Undertreated

Far too many physicians overlook and undertreat cancer pain, often because they are misinformed or fearful of reprimands for prescribing powerful painkillers. As a result, pain treatment methods that are relatively simple to use are still not adequately applied. Although this situation is improving daily, needed changes still come too late for many. Each minute of every day, people are dying of cancer and suffering needless pain in hospitals and clinics around the world. Many cancer patients try to keep a stiff upper lip; they bear an enormous physical and psychological burden, not realizing that everyone around them bears that burden too. Cancer patients don't suffer in isolation; their family, friends, and other caregivers who helplessly bear witness suffer along with them. Patients with cancer and their families and friends need to know that much of this pain is unnecessary and that they can take a proactive approach to make sure that they or their loved ones don't suffer needlessly.

Patients, families, and friends have a job to do: educating and asserting themselves. Armed with the facts presented here, they can learn to overcome their fears about the use of narcotic medications (also called opiates or opioids), ask for additional help when pain persists, and, ultimately, learn to adopt strategies that help doctors take full advantage of available resources to fight cancer pain. The bottom line: you never need to give up or assume that little can be done to ease the pain and suffering of cancer.

How Pain Is Harmful—Even Hazardous—to Health

There is no benefit from enduring cancer pain. Pain relief is of the utmost importance, not only for humanitarian reasons but also for medical reasons. Pain is harmful and debilitating. It interferes with eating, sleeping, mood, and maintaining a strong fighting spirit, which are all vital, especially in times of stress. It robs people of the energy needed to fight illness and hinders their ability to tolerate demanding cancer treatments—treatments that can affect their outcome. Pain also makes people irritable, anxious, fearful, angry, depressed, and sometimes even suicidal. In fact, pain is one of the major reasons why patients request physician-assisted suicide. Cancer patients in pain are twice as likely to be depressed, anxious, or have a panic disorder compared to those without pain. Pain also compromises general well-being, interfering with work, social relationships, recreational interests, mobility, and even the ability to take care of oneself, which in turn affects self-esteem, body image, and feelings of competence and control.

Perhaps most important, experts are finding that persistent pain can weaken or inhibit the immune system and may even influence tumor growth and the risk of death. Animal experiments have shown, for example, that the tumors in rats with pain that was not treated with morphine grew much faster than the tumors of rats that received morphine.

And a Johns Hopkins Hospital study showed that patients with pancreatic cancer whose pain was aggressively treated with a nerve block (which blocked pain signals) not only had less pain, used less medication, and were much more functional, but also lived considerably longer than the group receiving a placebo.1

Moreover, patients with pain are ranked lower on performance status (how well they function and get around), making them less likely to be candidates for experimental procedures or therapies.

Pain must no longer be regarded as just a side effect of cancer. Rather, it is a legitimate health problem that is part of the disease process and warrants ongoing treatment that is as aggressive as treatment of the tumor itself. You usually have only one chance to mount the most effective possible fight against cancer, and for the best chances of success, pain must be treated early and aggressively.

Most Families Will Be Affected

Despite the millions of dollars spent on research in the quest for a cure, each year 10 million people are diagnosed with cancer worldwide, including 1.3 million Americans, and 6 million will die from it.2

The second most common cause of death in the United States, cancer kills one in every four Americans, accounting for more than half a million cancer deaths each year; that's fifteen hundred a day, or more than one cancer death every minute.

American Cancer Society, Cancer Facts and Figures, 2003.

Men have a little less than a 1 in 2 lifetime risk and women have a little more than a 1 in 3 lifetime risk of developing cancer.3 More than 85 million Americans living today will develop cancer.4 The disease costs this country some $171.6 billion a year.5

When a person is first diagnosed with cancer, the first two questions that typically come to mind are "Am I going to die?" and "Will I be in pain?" But studies show that people think cancer is more painful than it really is. Granted, pain is one of the most common symptoms of cancer— about one-third of those in its early stages and up to 90 percent of those with advanced cancer will have pain that is severe enough to warrant treatment with strong pain medications. On any given day, about half of cancer patients experience pain; about one-third report moderate to severe pain.

Yet up to 40 percent of cancer patients receive inadequate relief.6 Studies published in the Journal of the American Medical Association and elsewhere document that that one-fourth of U.S. cancer patients with daily pain receive no pain medication, and that up to half of dying hospitalized patients experience significant pain in their final days.7 Elderly cancer patients are 40 percent more likely to be treated inadequately for pain; although almost 40 percent of the elderly in nursing homes report daily pain, only one-quarter receive pain medication.8 Thirty-seven percent of children with cancer die suffering from undertreated pain.9 Minorities and women are particularly vulnerable; studies show their cancer pain is much more likely to be ignored or sorely undertreated.10

Despite twenty-first-century technology and medical advances that offer a high quality of life despite cancer, up to 60 to 90 percent of those with cancer pain suffer unnecessarily—as many as 3.5 million people around the world every day."

The World Health Organization, one of the strongest proponents of treating cancer pain aggressively, asserts: "Freedom from pain should become the right of every cancer victim, and access to pain therapy is a measure of respect for this right."12

"You have a right to request pain relief. In fact, telling the doctor or nurse about pain is what all patients should do. The sooner you speak up, the better. It's often easier to control pain in its early stages, before it becomes severe."

Source; National Institutes of Health, National Cancer Institute, "Get Relief from Cancer Pain,"

In recent years, the American Academy of Pain Medicine, American Pain Society, American Cancer Society, National Comprehensive Cancer Network, American Society of Addiction Medicine, Drug Enforcement Administration, and many more authorities have issued consensus statements acknowledging that although preventing drug abuse is important, it is unrelated to and should have nothing to do with the aggressive treatment of cancer pain (and other chronic pain) with opioids. Ten years ago, the state of Wisconsin took the lead with its Wisconsin Cancer Pain Initiative; today every state participates in the American Alliance of Cancer Pain Initiatives, a national network of efforts to raise awareness of the proper use of pain control treatment (

In 1989 the first Intractable Pain Act was passed in Texas to make sure that no Texan requiring narcotics for pain relief, for whatever reason, was denied them because of a physician's real or perceived fear of disciplinary measures for prescribing opioids. Many states have followed suit. Today, the U.S. Congress has declared the years 2001 through 2010 the Decade of Pain Control and Research to help promote greater public and professional awareness of scientific, clinical, and personal issues concerning pain and pain management. And in April 2003 a bill was introduced into the House of Representatives (H.R. 1863, the National Pain Care Policy Act of 2003) to provide important federal recognition of pain as a priority health problem in the United States and to establish the National Center for Pain and Palliative Care Research.

There is simply no reason for patients with cancer to feel they must endure pain as part of their disease.

Why So Many Still Suffer

About 85 percent of the time, cancer's agony can be treated with relatively simple measures, such as analgesics (painkillers such as morphine and other opioids) or other simple medication-based treatments that have been in use for years and require only a doctor's prescription. For the remaining 15 percent, the pain can be relieved in almost all cases with more complex treatments that have developed in the burgeoning new medical subspecialty of cancer pain management.

Despite the sophisticated, technically advanced health care available in the United States, many Americans wish for death simply because they hurt too much, with no promise of relief. These appalling conditions persist because myths, misinformation, and biases about narcotic use abound despite massive educational efforts by public health experts, including U.S. government and scientific agencies.

On one hand, patients think they shouldn't complain; on the other, doctors and nurses don't always take complaints seriously. Fears about narcotics, street abuse of drugs, and confusing regulations inhibit doctors from prescribing adequate doses of painkillers and patients from using them when they are needed. How puzzling it is that U.S. scientists must file intricate forms to ensure the comfort of laboratory animals while no such guarantees exist for humans with life-threatening illnesses.

How Fears of Narcotics and Addiction Undermine Pain Treatment

Advocating for more responsible control of cancer pain is not the same as minimizing the dangers of drug abuse. Experts stress that these two issues are unrelated, except that exaggerated concerns about drug abuse makes cancer patients innocent victims of the war on drugs. More appropriate than the "Just say no" slogan would be "Just say no to drugs . . . unless prescribed by your physician for a legitimate medical disorder." Cancer pain often calls for the appropriate use of painkillers such as morphine. Until our culture distinguishes between legitimate and illicit uses of narcotics, many doctors will continue to be reluctant to prescribe these medications adequately and many patients will be reluctant to take them even when prescribed.

In fact, today's doctors do prescribe strong opioids more than ever, yet reports of abuse have actually fallen. In an article published in 2000 in the Journal of the American Medical Association, one of our most prestigious journals, researchers point out that between 1990 and 1996 medical prescriptions for treatment with the opioids hydromorphone, fentanyl, oxycodone, and morphine increased by 19 percent, 1,168 percent, 23 percent, and 59 percent, respectively, while reports of abuse of the first three of these drugs actually fell by 15 percent, 59 percent, and 29 percent, respectively, and for morphine rose by just 3 percent.13 Certainly some drugs intended for medical treatment are still diverted and abused, but compared with other drugs of abuse, improper use of prescription medications is quite low.

Clinical experience also indicates that the risk of addiction is minute when narcotics are used in a medical setting to treat pain associated with cancer, burns, or surgery. "Addiction is essentially not a problem in cancer patients; it is extraordinarily rare that cancer patients will become addicted to [opioids] even if they're used extensively," says Robert C. Young, M.D., president of Fox Chase Cancer Center in Philadelphia, and president of the American Cancer Society. "One study showed that of over 11,000 patients treated for pain relief, only 4 patients [developed] ... an addictive pattern . . . ; the second study showed that in 550 patients treated more than 40 days with [opioids] for pain management, there was not a single addiction among them; in practical terms, it's simply not a problem."14

Recent publicity about the misuse of the opioid OxyContin has added fuel to the fears about opioid use for cancer pain. Misuse of OxyContin and other drugs has skewed people's perceptions about these drugs when, in fact, the vast majority of people who are prescribed these medications by their doctors will not become addicted. Proper, routine oral use of OxyContin and other opioids does not produce a high or rush, which is why addicts who seek these feelings will crush and then sniff or inject the pills rather than swallow them, as patients seeking pain relief do. (Soon new formulations of OxyContin should reduce the risks of street abuse.)

The drug abuse problem will not be solved by reducing access to drugs that are helpful for the vast majority of cancer pain sufferers, since those who are addiction-prone will just seek other accessible drugs.

If the unfounded fears about the use of narcotics were dispelled, chances are that Jack Kevorkian's assisted-suicide movement and the euthanasia movement would fizzle out. The same drugs that destroy lives and families when they are abused can restore the lives and families of cancer patients when they are used properly, because they allow a return to a more active lifestyle that combats depression by promoting a greater capacity to fight disease and preserve quality of life.

Confusion Over Addiction, Physical Dependence, Tolerance, Withdrawal, and Pseudoaddiction

One of the major roots of the cancer pain problem is that far too many people, including many health care professionals, confuse addiction with physical dependence and other terms and hold outdated fears and unscientific ideas about the safety of opioids, which in some settings are actually safer than aspirin and acetaminophen (Tylenol). To dispel unfounded fears and promote the proper and appropriate use of cancer pain medications, it is critical that the terms addiction, physical dependence, tolerance, pseudo-addiction, and withdrawal be distinguished from each other.

Addiction is psychological dependence—a chronic neurobiological disease characterized by not being able to control drug use, craving and compulsively using drugs for nonmedical reasons, or continuing to use drugs despite harm. The need to obtain and use drugs completely controls the addict's life despite the presence or threat of physiological or psychological harm. As addict lose control over their drug use, they typically become increasingly less functional and more socially isolated. Addiction is extremely rare among cancer patients. Already fighting for their lives, cancer patients characteristically resent any additional threat to their fragile control and try to avoid drugs, often excessively, even when their use would help restore normal function.

Physical dependence refers to feeling sick and appearing ill when a drug that has been used consistently is abruptly stopped, when the dosage is dramatically reduced, or if a drug reversal agent or antagonist is administered. In contrast to addiction, which is rare in cancer patients, physical dependence is expected and usually inevitable, regardless of a person's character, values, or background, with the regular use of an opioid. Unlike addiction, which is psychological and behavioral, physical dependence is a biological response that is neither harmful nor dangerous, as long as it is recognized and managed properly. It is the natural result of the body growing accustomed to a medication (a process that also occurs with nonopioid drugs) and need not be feared. The development of physical

Sorting Out the Terms


Physical Dependence Addition

Almost always occurs with repeated use

Almost always occurs with repeated use

Rarely occurs in patients with pain

Body adapts to the effects of the drug over time (effect of the drug on breathing, nausea, and to a lesser extent pain becomes milder over time)

Body adapts to taking the drug and so may develop withdrawal (abstinence) symptoms (much like the flu) if medication is abruptly interrupted or dose largely reduced

A chronic neurobiological disease characterized by craving, inability to take the drug according to appropriate schedule, compulsive use of the drug, and/or continued use despite harm

Presents an extremely low risk of developing addiction (psychological dependence)

Presents an extremely low risk of developing addiction (psychological dependence)

Creates an obsession with getting and using a drug for nonmedical reasons; addicted people may report stolen/lost prescriptions, change doctors frequently, and/or also use nonprescribed psychoactive drugs

Drug is used only to relieve pain and usually does not cause a high

Higher doses may be needed to maintain same painkilling effect

Drug is used only to relieve pain and usually does not cause a high

Withdrawal symptoms may occur when drug is stopped but cease when drug use is restarted, even in lower-than-usual doses; symptoms can be avoided if medication is tapered in gradually lowered doses

Drug is sought to get high, boost mood, escape from reality, reduce anxiety, and/or become sedated; drug may be used in different ways, such as injecting diluted drug or sniffing crushed tablets

Desire for drug stems from psychological needs and choices (possibly from a genetic predisposition) and is not affected by risk to economic, social, and physical well-being

Drug use can help restore normal function

Drug use can help restore normal function

Instead of restoring normal function, drug use increases isolation and moves patient further from the mainstream of society dependence shouldn't interfere with pain control, since any symptoms of withdrawal (also known as abstinence syndrome) that occur once the drug is stopped can be entirely avoided by reducing the dose gradually. The cultural stigma of drug use is so strong that many cancer patients are anxious to be drug-free once painkillers are no longer needed and so discontinue pain medications more rapidly than is advisable. Be sure to consult a physician before discontinuing such medications.

Tolerance refers to the body's adaptation to a drug's effects over time, including respiratory depression (slowed breathing), nausea, and pain relief. Larger doses of a medication may be needed over time to achieve the same effect. Tolerance is expected with the chronic use of some medications and is totally unrelated to addiction. Tolerance shouldn't interfere with good pain control.

One benefit of tolerance is that when higher doses are needed, the increase is usually safe. Since there is no limit to how much tolerance may develop, there's no reason to worry about using pain medications early in an illness. Opioids can cause respiratory depression in those who are "opioid-naive" or unaccustomed to the use of strong pain medications, but fortunately this is one of the first effects for which tolerance develops. As long as opioids are started in low doses, they can later be adjusted upward so safely that even accidental overdoses are usually well tolerated. Constipation is the only side effect for which tolerance fails to develop, and it can be easily treated with activity, diet, and the prescribed use of mild laxatives.

The problems caused by our undertreatment of pain are so rampant that a new term, pseudoaddiction, has been coined to describe the misinterpreted behavior of patients who, when undertreated, understandably continue to seek needed relief. Well-meaning physicians who underprescribe because of exaggerated fears of addiction create a self-fulfilling prophecy, forcing patients with unrelieved pain to seek comfort by whatever means are necessary. But in such cases patients are craving pain relief rather than drugs per se. The term pseudoaddiction is unfortunate, since it implies that the patient is at fault, when in fact it is tightfisted prescribing and the system's failure to identify and adequately treat pain that forces patients to doctor-shop and hoard drugs.

The fear of opioid addiction is so powerful that institutional barriers intended to prevent addiction serve only to interfere with legitimate pain relief. These draconian measures may have seemed justified in the days when the medical use of opioids was thought to carry a significant risk of addiction, but in light of current knowledge, we see that such measures only prolong suffering.

Irrational fears of addiction plague patients and their loved ones as well. Patients may be reluctant to comply with their doctor's instructions, especially if they detect any mixed messages sent by poorly informed health care professionals or family members about the dangers of pain medications. Parents are especially concerned that children and teens who have cancer will grow up to be addicts if they take pain medication. In fact, when parents of children dying with cancer were asked about their major concern regarding narcotics, many reported fear that their child would grow up to be an addict, even though the families were grappling with a life-threatening illness that was causing treatable pain.

Simple exposure to a powerful drug won't change the values and behaviors a person has developed over a lifetime. Besides, for addiction to take root, some reward or high must become so desirable that one craves it again and again, no matter what the cost. We now recognize that instead of the euphoria that addicts experience with drug use, patients with pain feel dysphoria, an unpleasant sensation of being a bit groggy, "off," or just not quite themselves. When someone is already experiencing a disease such as cancer, which robs life of its normalcy, the last thing he wants is more loss of control; as a result, cancer patients usually shun taking more drugs than are needed to control their pain.

Many patients, during and after their cancer treatment, will need daily medication for pain. The focus is on monitoring and managing cancer pain with chronic use of medications. Just as we don't accuse people with diabetes or hypertension of being addicted to the medications they take daily, neither should cancer patients and survivors be stigmatized or humiliated for seeking relief.

Cultural Barriers to Pain Management

Undertreatment of cancer pain also is perpetuated by the common belief that the ability to endure pain is a virtue and reflects a strong character. Our culture depicts heroes as able to withstand great pain without flinching or complaining. These images imply that the old stiff-upper-lip syndrome— remaining stoic, refusing to complain—is somehow good for you. Others who feel this way, including some doctors and even families, regrettably may feel obligated to "build the character" of the patient by withholding adequate pain relief.

The other side of the coin is patients who don't seek relief for their pain because they "don't want to be a bother" or they fear they will be perceived as being weak-willed or of weak character. When it comes to a fight for one's life, it is not always virtuous to be the "good patient," since we all know that it's the squeaky wheel that gets the grease. Because doctors' and nurses' time is limited, they will naturally spend more time with those who express their concerns and problems, which may mean less time for those who are hesitant to ask for pain relief. A patient can't be helped if the care providers don't know that a problem exists. Cancer treatment is not like grade school: there's no gold star for quietly suffering or waiting an extra hour before the next pain pill.

In truth, trying to keep a stiff upper lip ultimately appears to do more harm than good. Even the bravest soul can remain stoic in the face of relentless pain only so long. Continued denial eventually crumbles, leading to a loss of self-esteem. And the longer that adequate pain relief is delayed, the more likely it is that a syndrome of anticipation and memory of pain will develop: the trauma of unrelieved pain is so grueling that even when the pain is not so bad, the patient remains fearful that his nemesis is just around the corner. Work with children who need repeated painful injections has shown that if the first treatment can be achieved relatively painlessly, repeated treatments are much less traumatic. Conversely, if children learn that something hurts, they will go to almost any lengths to avoid repetition.

Our culture also tends to compartmentalize the mind and body, and views pain as separate from the disease. These Western medical notions may interfere with treating the pain as an integral part of treating the disease and, ultimately, of treating the whole person. Professionals who still regard pain management as a stepchild of medicine do not focus on pain problems unless forced to, failing to recognize how important symptom control is to cancer treatment and quality of life.

Training of Doctors and Nurses

Although many patients are undermedicated for cancer-related pain, it is by no means because doctors are incompetent or uncaring; rather, they are uninformed. Pain medication is improperly used or underused because medical education mostly focuses on disease and its treatment and not on symptom control. Student doctors are usually taught how to treat short-term or acute pain from surgery or trauma, but most do not learn how to properly use painkillers such as morphine, the cornerstone of cancer pain treatment, for chronic pain. Relatively few schools adequately teach the principles of opioid use and other cancer pain treatments.

Various surveys reveal that more medical residents fail the on surveys regarding cancer pain than pass, and that doctors still fail to follow basic principles of treating cancer pain such as around-the-clock scheduling, inappropriately using meperidine (Demerol), and failing to take advantage of skin patches, pumps, and other new ways of administering relief.

Too Many Believe Options Will Run Out

Starting an opioid does not mean the "beginning of the end" or that aggressive treatments will no longer be pursued. The truth is that patients may need painkillers to resume a normal life during treatment. Then there is what some call the money-in-the-bank syndrome, which refers to the mistaken concern that there is only so much pain relief available, and if it is used too soon, it won't be available later. Patients fear that if they start taking narcotics too early, the drugs won't be as effective later, when they are "really" needed. Yet pain can be controlled both early in the disease as well as later, if it progresses. Nevertheless, about half of patients do not follow their doctors' orders when it comes to taking pain medication because of unfounded fears about opioids.

Doses May Vary Widely

Another problem that contributes to inadequate treatment of cancer pain is that prescribing strong painkillers, while still a science, is often an inexact one, and frequently requires educated trial and error. Determining the correct drug and dose for a particular patient can be difficult and time-consuming; it often requires well-thought-out trial and error until most of the pain is relieved with few side effects. That's because pain, pain thresholds, and a person's response and tolerance to medications vary widely, even in patients with the same kind of cancer. Also, pain cannot really be measured objectively, so proper treatment requires good communication between patient and doctor. Patients must feel comfortable discussing their discomfort, and doctors must trust their patients' report of pain.

Doctors can't know in advance which medication in what dose will be best tolerated by a given patient, so careful observation and a willingness to try different options are needed. Making the challenge even more complex is the fact that what relieves the pain today may not be adequate tomorrow, either because the disease has progressed or because the person has developed a tolerance to the medication. Every patient is different: one person will stay on the same dose for years, while another may need adjustments weekly.

Narcotic Doses and Tolerance Have No Upper Limit

Unfortunately, many health care professionals fail to understand that opioid medications such as morphine have no "ceiling effect" or upper limit as tolerance develops or pain intensifies. Although customary or standard doses of narcotics are published in older medical texts, these are based on the needs of patients taking opioids for the first time for acute pain (like labor pain or pain after surgery), not for the ongoing treatment of cancer-related chronic pain. While a typical starting dose of oral morphine may be as little as 20 to 30 milligrams (mg) every four hours (or 8 to 10 mg intravenously), some patients need and remain more functional on the equivalent of up to 35,000 mg a day. So treating pain requires good judgment and regular adjustments, rather than a cookbook approach such as that for treating infection, which usually responds to standardized doses. Hitting the moving target of cancer pain is harder and requires regular assessments and good communication.

With all of our contemporary medical advances, there is still no blood test or X-ray to detect how "real" pain is or how much pain exists. Going by the patient's report is still the best approach. While this is almost always reliable, doctors are used to trusting objective laboratory or radiological tests, especially when the fast-paced tempo of today's medical practice doesn't allow for the familiarity and trust engendered by contact with yesteryear's family doctor. As discussed in Chapter 4, patients and their families can do a lot to help doctors be more effective and comfortable in treating their pain by keeping diaries and pain scores.

Undermedication Is the Norm

Since many doctors still undermedicate cancer pain, they compound the error by teaching young doctors to do the same. And other doctors feel pressured to adhere to the norm of low doses set by their colleagues.

Even when an adequate range of doses is prescribed, some studies of postoperative pain show that most patients still only receive as little as one-quarter of the prescribed amount. In hospitals, it is nurses who usually dispense medications, and many nurses have their own misconceptions about what are safe and proper doses. So despite good intentions, the tendency to underdispense often wins out.

Yet the times are changing: in 2001, a San Francisco doctor was successfully sued for $1.5 million for giving inadequate amounts of pain medication to a dying cancer patient.

Misinformation About Breathing Problems

One of the most persistent myths that interferes with the optimal use of opioids is that these drugs are bad for breathing. Opioids do indeed slow breathing (a phenomenon known as respiratory depression), but this effect is gradual, controllable, and usually beneficial, as severe pain tends to increase respiratory rate. Dangerous respiratory depression is almost always limited to patients who are not yet accustomed to regular treatment with opioids, and then only when excessive doses are prescribed or are combined with other depressant drugs. Respiratory depression is not a serious risk when using low starting doses that are gradually adjusted upward. Tolerance develops in just a few days, so the threat becomes less and less of a problem. At somewhat increased risk for breathing problems are those with sleep apnea (intermittent cessation of breathing during sleep), the obese, and those using other depressant drugs, such as aggressively administered sedatives. Yet even in these circumstances, opioids can be used safely when steady doses are administered to counteract pain.

A relatively new finding that has revolutionized how doctors view the relationship between opioid use and breathing is the recognition that when opioids are properly used, they can actually improve the quality of breathing, especially in the very ill. The proper use of morphine is now a recognized treatment for shortness of breath and can improve breathing problems, especially in those with rapid or painful breathing. When patients are undertreated for pain, especially in the chest area, their ability to breathe deeply and cough is inhibited by their pain. The careful use of opioids in this setting allows patients to breathe more efficiently and clear their airways of excessive mucus. Also, rapid breathing is extremely inefficient because it does not allow sufficient time for oxygen from the lungs to get to the bloodstream. Shortness of breath can also trigger air hunger and panic. The use of opioids may slow breathing sufficiently to improve the efficiency of oxygen transport, thus easing panic and improving the efficiency of respiration. Thus morphine and other opioids are increasingly used in patients with breathing difficulties, even when pain is completely absent. Unfortunately, exaggerated concerns about respiratory depression still sometimes keep ill-informed doctors from prescribing enough medication to soothe the pain.

Underutilized Options

The frontiers of medical science are rapidly expanding, and keeping up with them is a challenge. Doctors who have mastered the use of simple painkillers (effective for most patients) may be unaware of different ways to administer morphine, of alternative drugs, and especially of effective drug combinations. For example, adjuvant analgesics are drugs that aren't normally regarded as painkillers but can relieve specific types of pain or enhance the painkilling effect of opioids. Also, electrical stimulation, nerve stimulation, surgical procedures to cut nerve pathways, and nerve blocks (see Chapter 9), as well as nondrug approaches such as relaxation training, biofeedback, hypnosis, acupuncture, and massage, used alone or in combination with painkillers, may help relieve pain, but are usually prescribed only by pain specialists.

The Need to Discuss Pain

A busy doctor may not ask a patient about pain, assuming that if the problem exists, the patient will bring it up without coaching. Patients should not wait for a doctor to ask about the pain. Sometimes the doctor may ask, "How are you?" to open a conversation, and the customary polite response of "Fine" may be recorded in the chart as "No pain today."

Patients are often reluctant to complain. They may feel that time with the physician is limited and their highest priority is to talk about curative treatment. They don't want to distract the doctor from this mission or bother or annoy him with their complaints. Some deny the pain in their effort to deny the disease and its possible progress. If pain has intensified, patients may not want to admit it; instead, they want to tell the doctor they feel better. Or perhaps they don't want to complain because they believe that their "good" behavior will be rewarded and that "bad" behavior will be punished. Yet reporting information about pain is vital—not only for diagnosing problems but to help improve a patient's physical and psychological status. Pain interferes with proper rest, nutrition, and a good attitude, which are never more important than during a cancer illness.

Many physicians and groups are so concerned that patients are not being asked about their pain that they have endorsed the American Pain Society's campaign to regard pain as "the fifth vital sign." Thus, when doctors or nurses measure blood pressure, pulse, temperature, and respiratory rate, they should also ask about the presence of pain, its severity, and the patient's satisfaction with its treatment.

But don't wait for your doctor to ask. Complaining about pain is not a weakness and shouldn't be an embarrassment. Patients and families who are reluctant to discuss the cancer pain problem are doing themselves and their doctors an enormous disservice.

Communication Between Patient and Medical Team

Often a doctor will prescribe a painkiller, usually a mild one at first, and the patient will passively accept that treatment, whether it works or not.


Cancer causes severe pain, and I just have to accept it.

Morphine and other narcotics will cause addiction

If I use morphine or another narcotic now, it won't work as well later. I should watt as long as possible.

Morphine and other narcotics are too strong and will make me groggy, confused, and delirious and will cause other side effects.

My doctor will view my complaining about pain negatively.

Talking about pain will distract the doctor from my cancer treatment.

Continuing or recurring pain means the cancer is worsening.


Many cancer patients never experience pain, and those who do can almost always get relief.

Cancer patients almost never become addicted to pain medications.

Morphine and other narcotics neither lose their effectiveness nor have a maximum dose. If pain gels worse, the dose can be gradually increased indefinitely until relief ensues.

Confusion and hallucinations are very rare when doses are selected carefully; drowsiness is common but not inevitable, and if it occurs, it usually resolves in a few days. Other side effects, such as nausea and constipation, can be avoided or easily treated.

Though sometimes true, this is not an excuse to suffer in silence, since it is now clear that pain is bad for health. Doctors need to be informed in order to help you.

Relieving pain is part of your cancer treatment. Good pain control means better rest, which helps your body fight the disease.

Pain is entirely unrelated to the progress or status of the underlying cancer in one-third of cases; it may be due to injury to nerves and other structures, a result of cancer treatments (chemotherapy, surgery, and radiation), or from an unrelated or indirect cause such as excessive bed rest, muscle strain, migraines, or stress.


Myths and Truths about Cancer Pain (continued)



1 don't want any shots, so I'll endure the pain.

More than 90 percent of medications for treating cancer pain can betaken by mouth or other noninvasive means, like a skin patch. Injections are sometimes an option but are almost never essential.

1 will lose control if 1 take morphine or similar drugs.

Although drowsiness is common at first, very few cancer patients feel high or lose control when they take pain medication properly. When maintaining control is an especially important concern, it should be recalled that uncontrolled pain is one of the key factors that reinforce feelings of power lessn ess.

Patients need to communicate frequently and effectively with their doctor if relief is not obtained or if side effects supervene. Together doctor and patient need to persevere until adequate relief is achieved. And remember, oncologists are not the only ones who can help—oncology nurses, physician assistants, anesthesiologists, pharmacists, psychologists, and social workers have invaluable advice about symptom control and are often part of the primary doctor's team.

Some medications, most notably the opioids, begin to work immediately, while others (mostly nonopioid medications) may take several days or even weeks before their effects are established and can be fully evaluated. Have clear expectations about how long it will be before a prescribed treatment is expected to become fully effective (called "latency to effect") so that you can report if the treatment does not seem to be working. In the case of opioids, an experienced physician will know after just the first few doses whether the proper drug and dose have been selected, and can make immediate changes to continue the process of achieving pain control. Likewise, report any side effects—most often they are minor, are to be expected, and will resolve with a little patience and reassurance, but sometimes a drug may need to be stopped or its dose changed. No one wants to be a bother, but remember that it is your doctor's job to attend to these issues, and he can't help if he is not well informed. Don't wait until the next scheduled visit to report problems.

Patients Often Don't Tell Doctors When They Don't Follow Recommendations

Some patients hesitate to take their medications around the clock, on a fixed schedule, as pain medications are often prescribed. Instead, they believe, incorrectly, that they should tough it out as long as possible. By that time, however, even the strongest painkillers are much, much less effective. Instead of a steady relief, an erratic drug schedule can trigger a roller coaster of pain. Patients may wait until the pain is intolerable, and then, because they have waited so long, medications may or may not relieve it, or may cause unpleasant side effects because medication use is erratic instead of stable. Even if the pain subsides, the patient anticipates that the next wave is around the corner, so anxiety builds and the memory of pain remains fresh. It is far more effective to maintain a moderate level of a painkiller in the bloodstream so that it can act preventively. In this way, the patient achieves a steadier quality of relief. The only way to accomplish this goal is to take medications as prescribed and on schedule.

How Pharmacists May Unintentionally Contribute to Undertreatment

Pharmacists also contribute to the undertreatment of cancer pain when they retain old-fashioned ideas about opioids. Studies show that many pharmacists don't know that it's lawful to prescribe for cancer pain on a long-term basis and an acceptable medical practice. Many are still unaware of what constitutes legitimate dispensing practices for controlled substances in patients with cancer, or they don't understand the distinctions among addiction, physical dependence, and tolerance.

Many pharmacists make patients feel guilty about taking opioids and may increase the chances that the patient won't comply fully with their doctor's instructions. Also, the opioids are highly regulated substances, and dispensing them means additional paperwork. Busy pharmacists have been known to overinterpret regulations and may refuse to fill prescriptions because of a simple spelling error or some other technicality. If this occurs, try to be patient, since they too are burdened by overly restrictive regulations.

However, do not accept being treated with a lack of dignity. Unfortunately, because of pharmacists' fears of being duped by drug addicts, patients with legitimate needs may be inappropriately humiliated when they are just trying to follow doctors' orders. This is especially common when patients are younger or do not appear very ill. If difficulties arise, simply request calmly and respectfully that the pharmacist telephone your physician for clarification.

Also, many pharmacists, especially in urban areas, don't stock morphine and other opioids because they fear theft. In more isolated areas, pharmacies may not stock up on opioids because of burdensome paperwork and relatively few requests. This reduced availability makes it difficult for many nonhospitalized patients, especially those who lack energy, to get needed medications. Although it's a good idea to call pharmacies in advance to find out if needed medications are available in adequate quantities, many pharmacists are reluctant to respond to such queries truthfully, and especially to patients they don't know, due to fears of robbery. Although pharmacists will occasionally indicate that needed medications cannot be ordered or would take too long to get, requests that such medications be ordered should be honored (wholesalers can almost always routinely provide any medication within twenty-four to forty-eight hours). Remain polite but firm and persistent. Try using the same pharmacy regularly, calmly identifying yourself and your problem, and discussing your concerns with a manager. You may need to use a hospital-based pharmacy or one recommended by your doctor. Fortunately, as a result of the virtual revolution that is ongoing to legitimize pain treatment, more and more pharmacies now routinely stock a great variety of pain medications and are more understanding of the patient's predicament, especially once the patient is known to them.

Increasingly, pharmacists are appreciating the positive role they can play in treating patients' pain. Recognizing the cancer patient's plight, some pharmacies have sprung up that specialize in providing these previously stigmatized drugs and can even manufacture or compound custom doses of a medication that your doctor may prefer.

You Have a Right To:

• Enjoy appropriate pain relief without unacceptable side effects

• Have your reports of pain believed

• Have your doctor try to relieve numbness, tingling, or burning sensations

• Ask your doctor repeatedly about changing prescriptions, times, or doses

• Request treatment with stronger medication

• Get immediate help

• Understand the medication plan

• Get expert advice

• Accept nothing less than the best pain control possible

• Enjoy life despite cancer

Laws Intimidate Many Doctors from Prescribing Adequate Pain Medication

As discussed, cancer pain patients are innocent victims of the war on drugs, a campaign to discourage the illegal and recreational use of certain drugs. Regulations to tightly control morphine and other opioids are intended to curb abuse and not to interfere with the practice of medicine, yet many doctors find the stringent regulations confusing, inhibiting, burdensome, and threatening. To prescribe opioids, many states require doctors to fill out time-consuming triplicate prescription forms that they must register for and order at their own expense. One copy goes to state regulators, who look for "abnormal" patterns of prescribing, which can have a chilling effect on doctors' prescribing behavior. Such prescriptions cannot be refilled automatically or by telephone and must be carefully accounted for; they are also very constrictive. If the patient's name is spelled incorrectly or if a doctor needs to change the quantity of the drug rapidly or wants to prescribe more than a week's worth of a drug on an urgent basis, there may be delays, frustrations, and fears of being investigated.

The cumbersome triplicate prescription program may be abandoned in the future, but what's in store may not be much better. Although New York State, for example, is phasing out the triplicate prescription pads and shifting to a computerized system, morphine and similar medications must still be prescribed on state-issued forms and will be monitored. Although such review systems do not directly prevent physicians from prescribing controlled substances, many doctors avoid prescribing them altogether or are reluctant to increase doses if their patients get sicker or more tolerant of the medication because many of the laws regulating controlled substances are ambiguous. Although high dosing is necessary for some cancer patients, it is still not the norm. Many doctors fear that if they prescribe opioids at all, they may attract the unwanted attention of regulatory agencies. Even if a doctor is cleared of wrongdoing, such an investigation could be damaging professionally and could incur high legal costs.

Even When Cure Is Unlikely, Comfort Is Critical

Millions are spent each year on cancer treatments, yet only a fraction of that goes to pain relief research and palliative treatments for cancer patients who will probably not get better. Focusing on curing cancer is essential, but such a single-minded focus overshadows important efforts to promote lifestyle changes and early detection. In recent years, more attention has been focused on comprehensive cancer care, which includes early

Why Cancer Pain Is Often Undertreated

Regulations and Laws

• Try to control drug abuse with stringent controls that inadvertently inhibit the medical use of opioids.

• Require cumbersome, time-consuming triplicate prescription forms that are intimidating, while ambiguous laws inadequately distinguish between illicit and legitimate medical use of opioids

• Inhibit physicians from prescribing large doses of opioids for fear of an investigation, community perception of wrongdoing, or sanction

• Vary widely from state to state, resulting in confusion between the legitimate and illicit use of opioids

Medical Staff

• May have inappropriately low expectations for successful pain relief.

• May have inadequate training for treating chronic pain

• May have unfounded, exaggerated concerns about addiction in cancer patients

• May be misinformed about breathing problems and other side effects of opioids

• May confuse addiction, physical dependence, tolerance, and pseudoaddiction

• May have misconceptions about tolerance and the need for larger doses over time

• May believe pain should be severe before it is treated

• May view complaints about pain as indicative of weak character that must be strengthened

• May give pain management a low priority.

• May undermedicate on a regular basis and thus perpetuate the practice in trainees

Patients and Families

• May think that complaining about pain is a sign of weakness and that stoicism is a virtue

• May erroneously believe that worsening pain means the disease is progressing

• May fear that the doctor will be distracted from curative treatment or will resent taking time to address problems regarding pain

• May fear addiction if opioids are used

• May view a patient who asks for opioids as drug-seeking

• May fear the side effects of opioids

• May not comply with instructions because they are overwhelmed, fearful, and ill-informed

• May try to be a "good patient" and not complain or imply that the doctor is at fault

Health Care System

• Is geared toward curative therapy and gives low priority to ensuring comfort

• Often requires patients to change doctors or institutions because of insurers' mandates, resulting in poor coordination of care

• Inhibits pharmacists from stocking morphine and other opioids because of additional paperwork, the risk of investigations, and the potential for theft detection, curative treatment, life-extending palliative treatments, symptom control, and even bereavement services for the families of cancer victims. This perspective acknowledges that patients' quality of life could be radically improved if cancer pain relief and palliative care (which deals with patients' psychological, social, and spiritual well-being as well as their physical comfort) were given more attention throughout the course of an illness. The overall five-year survival rate for a diagnosis of cancer still hovers near 50 percent (as it has for fifty years), and patients should not be abandoned just because they are not currently receiving potentially curative radiotherapy or chemotherapy. More doctors need to focus on treatment of the person, rather than just the disease; in that way, a person's comfort, dignity, and wholeness are kept in mind.

The Pain Management Revolution

The epidemic of undertreated pain has affected so many patients and has left so many families with a legacy of suffering that a virtual revolution is gaining ground exponentially: it's a movement of health care activists committed to improving cancer pain treatments. And this revolution is finally being endorsed by the administration of our health care delivery system. As of 2002, Medicare covers pain treatment costs, a move that may pave the way for private insurers and make it much easier to identify and find local doctors who specialize in pain treatment.

On the professional health care front, the Joint Commission on Accreditation of Healthcare Organizations; the premier association that evaluates hospitals, has adopted the improvement of hospital-based pain treatment as its latest initiative, effectively establishing a standard to which hospitals must adhere. The new standards assert patients' rights to the system's best efforts to render them free of pain and affirms that effective pain management is an essential component of health care. In addition, the state cancer pain initiative movement now includes all fifty states and has formed the American Alliance of Cancer Pain Initiatives to develop policies to improve the cancer pain problem. In the past few years, nearly every professional society and scientific organization concerned with the plight of the cancer patient has taken a strong and unequivocal stand on eradicating cancer pain, and most have issued guidelines intended to promote positive change.

Also, expertise in treating cancer pain is becoming much more widespread, largely as the result of teaching programs such as the AMA's Education for Physicians on End-of-Life Care (EPEC) curriculum. Cancer pain guidelines for doctors and patients (in English and Spanish) released by the federal government's Agency for Health Care Policy and Research (now

You Don't Have to Suffer!

• Cancer pain is dehumanizing.

• Pain relief restores dignity and control.

• Better pain control improves sleep, appetite, and mood.

• Treating the pain may help you fight the cancer and may improve survival.

• Treating the pain, even with strong medications, does not signify "giving up."

• Cancer pain is a medical problem with medical solutions.

• Cancer pain is often undertreated but can be relieved.

• Cancer pain is a family problem, too.

• The patient is the ultimate authority on the pain.

• "Toughing it out" is unnecessary and just doesn't pay.

• Treating the pain makes it easier to cope with the problems that won't go away.

• Many different medications can help.

• Strong medications needn't be saved until later stages of the illness; they don't stop working.

• Addiction is not well understood, even by doctors. It is rare in cancer patients.

• While medication side effects are common, they can be treated.

• When medications fail, high-tech treatments often work.

• Treatment is best aimed at the whole person: body, mind, and spirit.

• Effective pain treatment can usually be administered by your primary care doctor or oncologist.

• If a doctor is unwilling or unable to treat your pain, a referral to a pain specialist is warranted.

• Even if pain cannot be eliminated, it can almost always be controlled.

You have a right to expect freedom from cancer pain.

the Agency for Healthcare Research and Quality) with the American Pain Society have further helped legitimize needed changes, and attendance at professional meetings and conferences on pain control is soaring. Increasingly, hospitals are pulling together multidisciplinary teams to diagnose and treat pain, including cancer pain. California and the Veterans Administration require pain to be assessed as the "fifth vital sign," and this may become more widespread. In some areas, license renewal is contingent upon completion of education in pain management; in California, legislation encourages doctors treating dying patients to prescribe opioids "without fear of prosecution." And finally, the palliative care and hospice movements, with their basic premise of maximizing quality of life for terminally ill patients, are becoming more widely accepted (see Chapter 15).

While these activities have begun to foster a new environment that promises to one day make the tragedy of unrelieved cancer pain an unsightly historical footnote, much remains to be done to help legions of today's patients and their physicians overcome a legacy of misunderstanding.

The Right to Request and Obtain Adequate Relief

Changing human behavior is difficult—just look at how hard it is to stop smoking, lose weight, and exercise regularly. Thus it is difficult for doctors, despite education, to change their prescribing habits, especially when they feel threatened by regulatory agencies. Change is slow, and consumers cannot take for granted that they will receive state-of-the-art pain relief. If pain remains unrelieved or the patient cannot rest and sleep comfortably, family caregivers must persevere and ask for help from the doctor or medical team until comfort is achieved.

To ensure that a loved one does not suffer, consumers must learn what is available and appropriate for their unique situation, and how to be an advocate to work successfully to see that the pain is relieved. To ensure optimal relief, consumers need to know what to expect in the course of cancer pain treatment.

We must abandon old-fashioned notions about toughing out pain and begin to understand that pain undermines our body's best defenses against disease, not to mention the psychological and emotional suffering and toll on the quality of life that pain extracts. No one should suffer in vain and no patient should wish to die because of our failure to use the weapons we have to relieve pain.

Don't accept that you have to suffer.

Speak up. Tell your doctor or nurse when something's not working.

Plan for pain control. Understand your options and the potential side effects of each alternative.

Make sure your doctor shares your concerns. If a doctor says, "You're just going to have to live with it," look for a new doctor.

Be informed.

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